When Emma's sister, Kay, was told she needed a stem cell transplant, Emma really wanted to be a match for her. Luckily, she was, and Emma donated her stem cells to Kay last year. Three months after her stem cell transplant they got the devastating news that her cancer had returned and nothing more could be done. Kay passed away three months later. In this blog Emma shares her love for her sister, her experiences of grief and the complexity of emotions having been her sister's donor.
I wanted to share my experience because I felt quite isolated and alone when I lost my sister last year. It felt quite lonely not having anyone who's been through a similar experience to me, because I was also her stem cell donor. I had people around me, I had my husband and my friends, and they were absolutely brilliant, but there was no one who had a shared experience. So that's why I wanted to share my story so that other people feel less alone. My sister throughout her diagnosis always wanted to reach out and help people and get rid of the fear of dying. So I kind of want to carry on her legacy, to tell people: yes, I've lost someone, but it doesn't have to be a horrible, scary experience. Actually, there can be some healing and that you can take positives from that person's life.
My favourite person
My sister was the best person and she was one of my favourite people. I always say to my husband, ‘she's my favourite person, in a different way’. She was always so protective and so inspiring throughout all of her life, no matter what was thrown at her. She just was one of those people and she would always put everyone else first. She was so good at the little things, like finding you the perfect birthday card. She would search all year to find the one card. When I was at school, she was so protective because she was my older sister. If someone bullied me at school, she would always jump in and help me out.
We did typical sibling things - keeping secrets from our parents and getting up to mischief. Then, as adults, we got so much closer. It was just so lovely. We would be on FaceTime for hours and we'd just talk about absolute nonsense. She was just amazing. She was beautiful. I was always very jealous of her hair. She used to get it really, really long. And I can't grow mine past my shoulders. She was just always there for me. Our parents separated when we were quite young, so it's always been me and my sister. It was really hard when she eventually moved out of our mum's house, because that was the first time we were properly apart. It's just always been me and her against the world really. Even when she lived in Australia for a year, we'd still FaceTime and message as much as we could.
Being her donor
She started showing symptoms around the end of 2022. She had a blood test and then she got diagnosed very quickly with AML in the beginning of 2023. Her treatment plan was very quick. She was admitted to hospital within a week to start her treatment. She had to wait until she was in remission but throughout that whole time, I wanted to be tested, so we knew there was a donor for her. Eventually, when she was able to have the transplant, I was tested and I was a perfect match for her. She had a successful transplant, but unfortunately, her cancer was a lot stronger. She had a three-month bone marrow biopsy, and it showed that the cancer was coming back. And then she had about three extra months after that. So she was very thankful to me, even though it didn't last as long as we wanted. She always said, 'you gave me those extra months'.
Being her donor, I had so many mixed emotions. I was already on the Anthony Nolan register, before even my sister got diagnosed so I was always willing to do a donation and then obviously, when she got the diagnosis, I really wanted to do it. But then I had a lot of anxiety attached to that. I was thinking, oh my god, what if I'm not a match? I’ve failed her because I'm not a match. What if the transplant goes wrong? Then that's my fault. Even though you know all those things are out of your control, there’s a lot of anxiety and pressures attached to it. And it's hard, because she died and you kind of go ‘were my cells not good enough to save her? Is it my fault?’ You do feel a sense of responsibility afterwards. But when she got the terminal diagnosis, the doctors told me, ‘You’ve done all you can. All you can do now is just be her sister’. That will always stick with me.
What helped with my grief and what I wish I'd had
The literature that Anthony Nolan has about donation was really helpful too. It has a whole part in the booklet about sibling donation, and I had to keep holding on to the words that it's not your fault if you're not a match or if things don't go to plan. And you just have to hold on to that and hold on to the positivity of knowing I gave her the extra time. Also having my husband’s support and having time to process all of it - not just focus on the sadness, focus on the happiness and the good memories that we had together. My sister really wanted to do things, and she had on her bucket list ‘go to 30 different countries before I die’. We went to the 30th country together, about a month before she died and that is always going to be really, really special to me. With the time you do have left, I think you just have to count the blessings of each day that you have with them and make sure you’re making positive memories, and being there for them. I was really happy that I was able to be there for my sister's last few months.
It helps, being able to look back on those memories and think, yes, she felt horrible at times but she was able to achieve things. So I hold on to that feeling. Even though grief feels dark at times, I can still carry on doing things, like she did. I also had a counsellor right at the beginning of her diagnosis, so that gave me tools and coping strategies I can use when things are difficult. But I think what would have been even more helpful is having access to a group, having more people to talk to about losing a sibling, who have been through it themselves. I was given information but they were about parents losing children, or children losing their parents, but they never really had someone talking about losing a sibling. Sibling relationships are some of the most long-standing relationships in life, and to have that cut short and to know that she'll never know my daughter, it’s really hard. My sister wrote a letter to me near her end which she asked me to read after she died and she wrote ‘I'm really sorry that I'm not there for the whole of your life, but I feel so lucky and privileged that you were there for mine.’ I think that's what I struggle with most, having to make memories without her and knowing I have however long left without her. Having someone who understood that experience and feelings would have been really helpful. I think I would have healed quicker.
You just have to go with the waves of grief, which goes on for a really long time and I am not sure will ever go away. I've just got through all the first anniversaries so this next year will be really hard still, but it will be easier than the first. It's okay to still have days where you feel really, really sad that she's not there. It’s okay to wish you were able to call her and talk to her about things. And it’s also okay to live my life. I remind myself that she would want me to be happy. You're always going to feel robbed of the time and the memories that you could have made with that person, but she would want me to go on holiday and see the world, she would want me to do all these amazing things, and that's what I try to hold on to. There's going to be a part of me that feels really guilty but I remind myself that she would be really happy and excited for me. And I can think about her in those moments and go ‘How beautiful is this, you would have loved this’. So, for me, it’s just about trying to spin things more positively rather than letting the negative emotions take over.
Even if you've had lots of time to process what’s going to happen, I think nothing prepares you for the actual death. You could have two weeks or you could have been given three years, but nothing will prepare you for that moment and it's okay to feel all the range of emotions in that moment and afterwards. When she died, I was a little bit relieved knowing she was no longer in pain. She had so much medication to numb the pain, and I was relieved that she wasn’t in pain anymore, but then you get this wave of grief, of realising that means now I can't call her, I can't make new memories with her. It's a bit surreal too, because you are so focused on them and then once you lose them, you can think about yourself again. So you have to begin to look after yourself because you’re so used to being distracted by focussing on the other person in that time. And it impacts you in so many different ways emotionally, physically, even financially. Once it's happened and you lose them, you kind of feel a little bit lost in a different way, you don't have that person to focus on, you have to now focus on yourself. It's a real mixed bag of emotions. You just have to ride the waves and use the people around you to support you through it. I think you learn to live without them, but you will never stop missing them, and that’s okay.
Grief is personal, and everyone will react differently. It’s important to know that however you may be feeling, there isn’t a right or wrong – try not to place expectations on yourself about how you should feel, or how long you should grieve for.
Please know that however you’re feeling, our lovely team are here to support you. You can call us on 0303 303 0303, or email patientinfo@anthonynolan.org, or have a look at our bereavement page.